Ditto to what Ema and taniaaust1 posted about starting with a small dose of Florinef (fludrocortisone) and then ramping up slowly. I started with a 1/4 tablet back when I first started that drug. And I also took extra salt (salt tablets or extra salt on my food) and drank extra water (2-3 liters per day). Both salt and water should be ramped up slowly, too, along with the drug. Of course, I wouldn't blame you if you decided not to start over.
I've been on Florinef for many years (since 1995). It helped me the most during the first 4-5 years. Then it seemed to wear off slowly and did not help me as much. In 2003, I added midodrine (a vasoconstrictor) and that helped. I also take a time released prescription potassium (some generic version of Klor-con, 10 meq tablet).
I do not find that either drug helps much with exercise intolerance. They do help with allowing me to be upright longer.
The biggest surprise was that midodrine helped my sleep so much. This was strange since the drug is short lasting (about 4 hours) and has worn off long before I go to bed. Since midodrine can cause BP to go too high at night it must be taken so that it wears off before bedtime. The explanation for better sleep (according to both my doctors) seems to be that when I minimize symptoms caused by my OI (my diagnosis is Neurally Mediated Hypotension) then my sleep is improved.
It's counter intuitive since, for most people, doing more during the day means they are more tired and they sleep better. For me, the more I rest during the day the better I sleep. It's infuriating to someone who wants to be doing stuff and not just sitting still. But I don't want to digress too much into midodrine since this is a thread about florinef.
My current drug combo helps me but I can still crash if I do "too much." This means not enough pacing of my basic activities, e.g., too much time in the kitchen trying to cook something (even though I have chairs/stools and sit down as much as possible) or sitting upright at the computer too long. It does not mean I can take a 30 minute walk or lift weights or do any type of actual "exercise" without payback.
Adjusting meds is a very complicated thing. Each of us seems to have a different set of what works vs. what doesn't work, serious vs. minor side effects, and so on. It really sucks to have to deal with such a complex illness! But I have learned that trial and error, and trusting my own gut, is what works best.
Hugocfs, I hope you find something that works for you. Sending you some
HUGS
!!!